First Days at the NIH

Upon arriving at the NIH, we were impressed by the ultra-tight security. So, we're very unlikely to be bombed. We spent the first full day in the clinic (7:30am to 5:30pm). As with all hospitals, the NIH metes hours out differently. Normal day: 1 hour = 60 minutes (unless renewing your driver's license or visiting distant relatives). Hospital time: 1 hour = 253 minutes (a Mansfield average). NIH time: 1 hour = 125 minutes (average of our first two days, based on response to question, "how long will it be before Dr(s) Dave/Fox/Chuk will see us?") We are thrilled by the care we are receiving here, the Children's Inn (sort of like a cross between a Hostel and a Hotel) and the relatively compressed NIH time. We did have one unpleasant surgeon utter some ridicuously stupid statements. To our response when asked where we received treatment the first time, he said, "you were in New York City and didn't go to Sloan Kettering???" I shot him frozen eye darts of death, which merely whizzed past him. When asked if I could accompany Killian to the operating room, he then went on to suggest that Killian should man-up at 15 years of age, and that he shouldn't need me in there with him. I progressed from frozen eye darts of death and angry tone of voice to meeting with a patient representative. Really, though, that guy's a blip on our radar here. Everyone else has been outstanding.

Killian's surgery to get his central line port in was four hours ago and he's in the recreational room down the hall playing air hockey with a gorgeous child life specialist. I'll bring him his ukulele later so he can cement his legacy of charm. He's on his A-game in terms of the old charm today. He's cracked wise since coming out of surgery and hasn't stopped. He even got someone to come to the hospital from another part of the NIH campus to give him acupuncture, to which he is attributing his current air hockey athelticism and really great post surgical mobility.

Tomorrow he starts Yondelis (we call it Trabectedin here).